Survivor versus Surviving

The term “cancer survivor” has become part of our everyday lexicon. Even within the cancer community, there is confusion as to what exactly it means. According to the National Coalition of Cancer Survivors, survival is… “from the point of diagnosis forward”.

When considering overall survival statistics for a particular cancer, there is a more specific reference point: it is the percentage of people who will still be living after five years (excluding those who die from other causes). Before I go any further, it is important to clarify that survival statistics should be viewed as estimates, and not actual predictors of an individual’s prognosis. Statistics describe a trend, or a likelihood of an event (in this case, death from cancer) in a large group of people. They are based on actuarial tables that are by necessity at least five years old, and thus may not reflect recent treatment advances.

Statistics are in essence a fraction. When you read that lung cancer has an overall survival statistic of 15%, it means that the number of people diagnosed with lung cancer over a period of five years (the denominator) has been divided by the number of deaths over that same five year period (the numerator).

Overall survival statistics are all inclusive as far as type (NSCLC and SCLC) and stage, and do not address other considerations such as disease or progression-free status.

Survival statistics that are broken down by cancer type and stage, are more useful for evaluating treatment options and for predicting prognosis. But, it is possible to focus too much on these statistics. “What stage?” is often the first thing we ask after we are given a cancer diagnosis. In essence, we are asking whether or not we have reason to hope.

After my lobectomy, I was staged a IB. I felt incredibly fortunate, but that sense of good fortune was tempered by the awareness that being staged a IB was very different from being staged a IA. The difference between an A and a B was a significant survival advantage. Statistically speaking, cure was possible, but certainly not probable.

I became all too aware of the emotional impact of staging when I went from stage IB to IV. It was devastating. My cancer was essentially the same cancer, but now, statistically speaking, the situation seemed hopeless.

The Merriam Webster definition of survivor is: 1. to remain alive or in existence, to live on. 2. to continue to function or prosper.

I certainly wasn’t prospering, and it was questionable how much longer I would function or even continue to exist. And yet, I was indeed still hopeful and there was no question that I was still alive. Did this make me a survivor?

Survivor seems to me to imply that the trauma has passed. You’ve faced a great challenge, yet you have persevered. There was no question that I was facing a great challenge, but I knew that it was highly unlikely that ultimately I would either persevere or prosper.

I don’t refer to myself as a lung cancer survivor. I prefer to say that I am surviving lung cancer. To me, this clears up misconceptions about both my status (terminal, rather than in remission or cured) as well as to the degree that I am still involved in this battle. Each day is a fight for survival, every new breath is a victory.

5 responses to “Survivor versus Surviving”

Very well stated! My mom came across your blog and forwarded it to me. I am also living with stage IV lung cancer and never know how to answer the question about the reality of my situation. Often people ask – are you in remission? I don’t have visible signs of cancer- but can a person with stage IV really ever be in remission? Again- thanks for your blog entry especially the part about SURVIVING lung cancer.

Emily–I just checked out your website and I will continue to do so. You have a beautiful family and a beautiful life. I’m sorry that this is your story too, but I admire your motivation and courage in telling it. It is incomprehensible that someone as young as yourself; someone with such a healthy lifestyle, could get lung cancer. However, because you possess those attributes, you are that much better prepared to fight. I love your story about hiking in Colorado–that’s an accomplishment! Stay strong and please stay in touch. Linnea

Dear Linnea, This is an excellent piece of writing. I have decided to feature it as well as a post from another lung cancer blogger for this week’s Guest Post at http://www.beingcancer.net. I have included two hot links to your site so you may see some new visitors. It will be posted Wednesday, August 26.
Take care, Dennis